I am a 39 year old female classical singer and singing teacher. Also studying part-time (a BA Psychology). I live in Cape Town, South Africa.
Some more about me:
I am a family person. When feeling out of sorts my nieces and nephew brighten my day. I’m very close to my sister, brother, mom and dad. I love lying by a pool with a good book. In fact, I wouldn’t mind doing that for the rest of my life; I’m sure my ulcerative colitis would be cured!
I am currently mostly in remission but sometimes experience a ”pulling feeling”, like pressure on my bladder with a need to pee often… when this happens I know I am flaring slightly but not badly enough for obvious symptoms to present themselves. It’s a state of discomfort which drives me mildly insane…!
Cape Town Colitis
Hi everyone, happy new year! I’ve had UC for 12 years. Initially I was diagnosed with proctitis and felt reassured that my Ulcerative Colitis was limited. Eventually, 2 years ago, my UC travelled up I went on a clinical trial, testing the use of Pentasa in a very high dose and became very ill, losing a lot of weight and resulting in hospitalisation for a a week. I was put onto Methotrexate injections and went into remission for about 9 months. Then I flared. I must tell you, I tried the Prednisone thing a couple of times… I lasted at most – a month. I’m really not sure how others persevere on it. I felt so out of it and on edge that I found it difficult to get on with my life. I HATE that drug. I told my doctor I wanted Revellex (Infliximab). I had to wait for my medical aid scheme to be upgraded and then for them to approve it which took a few months. So, I go for the infusion every 2 months and inject myself with methotrexate once a week.
I have come to terms with having UC, for the most part. There are days when I feel sorry for myself and really angry that I have this disease that will never go away. I feel fatigued from the disease and from the drugs and that makes life difficult at times but I try to be positive. I am a member of a facebook support group for IBD, started by a woman in Johannesburg and we have meetings every 3 months or so in our various cities. The group is open to anyone in the world with IBD. We also have a small BBM group which is very supportive. I believe groups, such as the one here, are vital to helping people with UC or Crohns deal with the conditions because we can feel so alone, helpless and despairing. Knowing that there are millions of others out there in the world going through similar hardships and being on a support group and being able to share stories, give and receive support and information has helped me tremendously. I am lucky that my family is very supportive and my doctor and his team are excellent.
Biggest Pet UC-related Hate: Colonoscopies! Oh my word…. I’m not sure what you drink in other parts of the world but Kleenprep has to be The Worst bowel cleanser known to man. I gag on the first sip but somehow manage to get through drinking it. The actual colonoscopy…. need I say anything? The words loss of dignity, humiliation, fear and pain come to mind. I normally force my doc to up the meds a little way into the procedure as it’s painful, then it’s ok and we have some ridiculous chit-chat while watching a 3D movies of my insides.
I’m on methotrexate and Revellex (infliximab) I feel horrible once a week from the methotrexate… cloudy headed, nauseous, headachy and tired. I really wish I could go off it! It affects my quality of life but the alternative (flaring) is worse. I take Omega 3 capsules and folic acid.
written by Sunny Cape
submitted in the colitis venting area